Anonymous wrote:

Anonymous wrote:

Anonymous wrote:How are they getting therapies if no neuropsyche diagnosis yet?

Obviously through early evaluation or cpse. They diagnosis need for services from the standpoint of capability to access the school curriculum. They do not diagnose disorders.

OP, how old is your child? You’re never too young for a developmental pediatrician or a pediatric neurologist. There are resources they may recommend including parent child training. You are not alone. It’s very hard. Do you have a therapist for yourself?

No, and this is specifically why I wrote this thread. Are there types of therapists who specialize in helping parents develop the tools and strategies to adjust to SN kids?

TBH, going to a childless therapist in their mid-30s with no experience/specialization in these issues doesn't seem very helpful. Telling me to "have more patience" will make me want to chuck my iPad out the window.

I looked for therapists with specialties in parenting kids with disabilities and didn’t find any in the area. I have since found that therapists with deep expertise in trauma are excellent for kids with disabilities. My therapist, who practices ISTDP is excellent. But I’ve had a number of special needs parents that have highly recommended EMDR as helpful. The types of therapists who use these therapies tend to be older and more experienced in general. It’s not your basic CBT for the fresh out of social work school.

On a different note, OP, does your kid react to all screens the same? My kid gets very dysregulated from watching cocomelon youtube videos on an ipad but has no problem watching the exact same videos on youtube streaming through the tv. She also doesn’t get sucked in with listening to music on a phone either. We rarely bring out the ipad but have no problems sitting her in front of the tv to get a break.

Lastly, in my case, I think a lot of the distress I feel is stress and incomplete stress cycles. I recommend the book Burnout by emily nagoski and her sister because it really explains stress and completing the stress cycle. It really helps me a lot if I’m able to complete the stress cycle after bad interactions with my child. DH and I also make a lot of time for one of us to have time away from our kid - weekend trips with friends, dinner out, exercising, etc. and when everything else fails, I recommend whiskey.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:This set up with a nanny who helps to raise a child sounds great. Where and how do you find such a help?

PP here. We didn’t set out looking for this, but it evolved over the course of a decade with our long term nanny who became family to us.

I found her in a Facebook group haha. We've built up trust over many years.

She’s an immigrant without any special educational background.

I've heard of these special nannies that become trusted overtime caregivers after many years. You get lucky by having someone come into your life like them and you do everything you can to keep them happy and motivated to provide this invaluable service. Because it is often hard work and they need to feel that you appreciate, respect and value them.

Pp here. Yes, exactly. She’s extremely well compensated but more than anything, we respect her and treat her as a trusted collaborator and advisor, and never as a servant or a subordinate. We put her on a pedestal and pay close attention to what her needs, preferences, and priorities are.

Anonymous wrote:

Anonymous wrote:This set up with a nanny who helps to raise a child sounds great. Where and how do you find such a help?

PP here. We didn’t set out looking for this, but it evolved over the course of a decade with our long term nanny who became family to us.

I found her in a Facebook group haha. We've built up trust over many years.

She’s an immigrant without any special educational background.

I've heard of these special nannies that become trusted overtime caregivers after many years. You get lucky by having someone come into your life like them and you do everything you can to keep them happy and motivated to provide this invaluable service. Because it is often hard work and they need to feel that you appreciate, respect and value them.

Anonymous wrote:This set up with a nanny who helps to raise a child sounds great. Where and how do you find such a help?

PP here. We didn’t set out looking for this, but it evolved over the course of a decade with our long term nanny who became family to us.

I found her in a Facebook group haha. We've built up trust over many years.

She’s an immigrant without any special educational background.

I would try to hire someone for some type of respite care an hour or two a day...... You can't be the best version of yourself as a person. A wife, a mother, a woman. If you are not able to recharge, it sounds like you are running on empty.

I'm in a similar boat to OP and I just read both the Holland and the Beirut essays based on the conversation here and they were both relatable in different ways. Neither one seems dangerous? They are both short and meant to convey feelings, not facts. And essentially making the same point, which is that having a child with special needs is a different sort of parenting and experience than most of us anticipated when we had kids. Whether that feels like landing in Holland or Beirut unexpectedly sort of depends on the day, the situation, your support system, etc. I get both sides. Neither is a dangerous idea.

Anonymous wrote:Have you read “ Welcome to Holland” it’s not going to fix his you feel necessarily but may help you stop comparing yourself to your friends with typical kids.
Can you and spouse give each other breaks so you can still get a break? Use that time to work out?

No, "Welcome to Beirut" is what you want to read. http://www.bbbautism.com/beginners_beirut.htm

Anonymous wrote:This set up with a nanny who helps to raise a child sounds great. Where and how do you find such a help?

You can ask on your neighborhood listserves, in local parent support group and care.com and sitter sity have filters for special needs experience. The PP's set up is very unusual, being part of SN community I haven't heard of anything like that. You would have to have a lot of comfort with the person and their household. Given than there are older kids there it's a risk. ND children are at a much higher risk of abuse, including sexual abuse. If your child is in someone else's house - you have to take a leap of faith. Sounds like PP found a good match, but it's not a typical arrangement in SN universe.

Anonymous wrote:Have a young child who is clearly on the spectrum or ADHD, but too young for a neuropsyche at this time. I am not cut out for this - the emotional outbursts, dysregulation, full blown tantrums in public inappropriate for their age, stimming behaviors, extreme lack of focus, etc. It has made me depressed, I'm constantly cursing under my breath, and I no longer have a sense of happiness when I'm in my home. I'm anxious for the next blow-up or meltdown. My spouse is much more patient, but I'm really not handling it well. The only time I'm at ease is when I go to work.

Is there someone I can speak with or resources to read to get a handle on this? Kid is getting therapies in school and from a private practice. But I need better tools to cope with this. None of our friends are dealing with this (either childless or have easy-going kids), so they are not a good sounding board.

I literally cannot imagine dealing with this for the rest of my life. It depresses the hell out of me to know that I will be dealing with a teenager with these issues.

OP I read this and started to cry--it is such a lonely place to be. I haven't been on DCUM in years (i have a teen) and was going to post something similar. I can't keep living this miserable life. I want to run away/escape. And I'm not being social bc I feel so disconnected from friends--one even said, "aren't those just typical teen issues?" and a month later DC got admitted to a PHP. people not familiar with SN kids are well meaning, but so clueless. which makes me further isolate. None of which is good for my teen. my ex/his dad died a few years ago and was my only family in the area. I love my job and where i live. but every day i think about moving closer to family.

I've read through the entire thread and will sign up for the parent child journey weekly call. I know I need connection to others dealing with these kinds of pressures. And i need a new therapist who works with SN families. my dream would be a temporary boarding school/facility to give me a break. ha--if anyone knows of one, please share!

any other suggestions for connecting with other SN families? and thank you to everyone who has shared such kindness in response to OP's post--just reading this thread has made me feel less alone.

This set up with a nanny who helps to raise a child sounds great. Where and how do you find such a help?

Anonymous wrote:This is going to sound terrible, but our situation is identical and we have essentially half outsourced raising him to a phenomenal nanny who has half adopted him (not literally). He spends 2-3 nights per week at her house.

It costs a fortune but it has been absolutely wonderful and he actually does better with her. She has her own children who are older and stronger than our DS, and he actually does great with them and they model good behavior for him and force him to do chores, etc.

My deep secret shame is that during the summer, the nanny picked DS up on Monday mornings and dropped him off at our house on Friday nights. It was pure bliss.

I remember you - you posted about this set up before.

Hugs. Also, gently, consider checking your expectations. It struck me that you said your child is too young for a neuropsych and unable to handle electronics responsibly. No child that young can do that.

hi OP, I'm so sorry. it is so hard! For us age 5 with medication (ADHD) has been much better. It is still hard at times, but so much better. How old is your child? ASD can usually be diagnosed quite early and in some cases, ADHD can be diagnosed at 3 and 4 depending on how severe, so make sure you have the right professionals in your corner. Sounds like a therapist more specialized in the issues you're dealing with would be helpful.

I also second Dan Shapiro course as a place to start. I hope you get some relief in the coming years.

Hey, do not shamed her WTH poster. Would you rather read about her snapping on the news? Do what you have to do to stay sane and keep grinding. My MIL is a SPecial Educator in an Autism school inside of Clopper Mill ES. She is a godsend for myself and my family. I literally moved her in with me to save us from impending doom. I am Type A psycho so this whole journey has been dystopian to say the least.

Anonymous wrote:

Anonymous wrote:This is going to sound terrible, but our situation is identical and we have essentially half outsourced raising him to a phenomenal nanny who has half adopted him (not literally). He spends 2-3 nights per week at her house.

It costs a fortune but it has been absolutely wonderful and he actually does better with her. She has her own children who are older and stronger than our DS, and he actually does great with them and they model good behavior for him and force him to do chores, etc.

My deep secret shame is that during the summer, the nanny picked DS up on Monday mornings and dropped him off at our house on Friday nights. It was pure bliss.

WTH

Ignore this response, pp. What you have figured out is how to take care of everyone in your family. Bravo. And if I had the means, I'd do the same. You don't have to be a martyr to prove you are a good parent. And "good parenting" looks very different for our kids.